Essays plus more for the mind and spirit

Anatomy of an Illness, Part 14

The only reason I would not like to die for many years is that it would be taking me away from my old man. I want as much time with Jerry as I can possibly have. I love him in everything that he is. He has become my spiritual teacher and he’s teaching me perhaps the most important thing any human being can learn in life. I’m learning how to receive love from him in healthy and unconditional ways, as well as learning how to give love back in the same two ways. I am learning this also from my CMA recovery family. The remarkable men in my home recovery group, which actually meets in my home, will do anything they can to see to my well being. Jerry is away at a conference, even though he was afraid to leave me alone, because I fall so easily and I have a very strict medication schedule. What allowed him to go was that there were men staying with me overnight every night and during the day each day. Not since my Queer family, all of who were slaughtered in the AIDS genocide of the 1980’s and 90’s, have I ever known such love and commitment from friends. I love my CMA men completely in all ways and always. All my previous long-term relationships have taught me a myriad of things, all of them important to my spiritual growth.

Sometimes that spiritual growth was in the Light and sometimes it was in the Darkness, but all the things I have learned are important on my journey through life and for my spiritual growth, which grows deeper and more profound as I walk each day in sobriety with all my illnesses and challenges, receiving an abundance of Love which ultimately comes through the grace of the Mother. Each of those relationships was a practice run for this relationship with Jerry, the final relationship of my life. I need him. I need his love and respect and compassion. I need him now especially with my disability. If Jerry were not around I would be totally helpless, because I cannot stand for very long because of the tremors in my legs and the chronic lower back pain, which means I can’t cook for myself, and I certainly can’t go out to get groceries, because of the weakness of and tremors, first in my legs and then my entire body starts to shake. I can’t even wash dishes from just one meal and keep my balance at the sink. I do keep my balance when I use my roller walker.

After falling three times on my left shoulder and knee, the consequent pain in my shoulder is quite severe. I tore the left rotator cuff. I tore the right rotator cuff after the first of two falls out in the street nearly eight or nine months ago. All of the other falls have been since mid May and today is just the beginning of August. Fortunately, because I’m not married to Jerry (we don’t feel a need for that kind of validation and we have taken care of all necessary legal matters regarding my health care and his), he can be in a state program as my Personal Assistant (PA) that pays him for all his hours of work taking care of me, and that along with my very small Social Security and rent subsidy from the AIDS Foundation of Chicago (AFC), we have a very workable income now because of that. Without Jerry’s PA wages we would never be able to afford this one bedroom apartment that we have in Lincoln Park. I especially need to be in this apartment because it is handicap accessible and cannot be anywhere else such as a nursing home, which for me would be lethal. There have been too many questionable deaths of senior Gaymen from sexual and physical abuse and neglect in state-run nursing homes for me to ever trust one. Rape is rampant. I plan on dying in my own home if at all possible with Jerry by my bedside.

I now wear a digital medical alert bracelet with four gigs of memory for my meds, my doctors’ phone numbers, my hospitalizations, my surgeries, my DNR, my Power of Attorney for healthcare, my allergies to medications, my emergency phone numbers (Jerry’s is the first), and any other information pertaining to my health care including a complete family history of various illnesses. I am also paying for a Medical Alert Phone System that works through my cell phone so that if I fall and cannot get up I just press the button on my pendant that hangs around my neck and it activates alarm banks at Bay Medical Alert. Both the system and the medical alert flash drive that is on my right wrist give me just enough of the safety net that most of my anxiety is fairly well alleviated.

The worst part is that I have been very anxious lately regarding my safety in my apartment, especially if I fall and break a bone or my hip. I have fallen seven times since May, three outside in the street and four in my apartment. Except for the first fall in which I tore my right shoulder rotator cuff that required five months of good physical therapy both in the PT gym and at home. From that PT my right arm has full range of motion. My left, however, cannot be lifted at all if I am lying down and only slightly when I am up and around. Not five minutes ago I fell again, this time in the kitchen getting some blackberries for breakfast. In order for me to not hit the floor, I grabbed onto one of the countertops with my right hand putting all my body weight on my left shoulder against the refrigerator and just exacerbated the tear as I pushed myself up with my legs. It is terribly painful. I’ve gotten an order for physical therapy from my wonderful physician, Todd, and it will be specifically for a tear of the left rotator cuff. I had my first PT session today after the initial evaluation, and the therapist said it would heal with lots of work on my part.

This past weekend Jerry is out of town at a conference in Malibu, California (he needs the respite care very much), and I have men from my Thursday night home CMA group staying with me throughout most of the day and all of each night that Jerry is gone. Right now one of those men is asleep in our bed. I am sleeping on the sofa in living room on which I often fall asleep during the night after waking at 2:30 AM.

It’s 3:00 AM and I’m up until about 7:00 when I will take the first nap of three or four that I will take today, as I do every day. The PT said there is nothing he can do for my weakness and fatigue in my legs because of the Parkinsonism, which atrophies the muscles in my legs, and I am in great pain when I walk. My entire body feels as if it is being stretched on a medieval rack that was used to torture people, especially heretics and political prisoners. Men who love men and women who love women and were powerful in themselves as women and who loved the Earth and the Mother, and didn’t need the men of the church to tell them what to do. Consequently, because they were powerfully self-aware women and had a spirituality that was utterly woman-based, and Earthbound, and because they were a threat to the power of the church, they were labeled as witches and either burned it the stake or ducked or tortured until she/he confessed, at which time they were burned anyway, but now with having “confessed her/his sins”. The rack was used to extract their confessions.

To alleviate the rack-like pain, I have taken a dose of 30 mgs of Hydrocodone and I have the 225 mcg of Fentanyl plastered on my body and nothing is helping. Something has happened to my body that is so fucking scary. The Parkinsonism has progressed in one month to what should have taken years to develop. My hand and quads have such severe tremors and weakness from the atrophy and the misfiring of my brain from lack of Dopamine and the neuropathy in my feet, that I could not walk more than 50 feet yesterday because I could not even hold on to the walker before Jerry had to turn my roller walker into a transportation chair to get to the bus stop. The bus stop is one very long block from my apartment. It is the corner on which my HIV/AIDS doctor, as well as do all my other doctors, have their offices: my Cardiologist, my Nephrologist, my Podiatrist, my Orthopedist, my Retina specialist, my Ophthalmologist, and my Neurologist. They are all associated with the hospital in which I have already spent far too much time. I expect that I will spend a great deal of time there in the near future. It is not something I look forward to. Perhaps that will be fairly soon or that will be months away. What I know tonight and through this whole past year is that my body is shutting down slowly. But, after this week and especially because of what happened today, I know that my health is finally getting down to the wire.

This all has me thinking about death a great deal. I talked with my therapist last week and said that if I die tomorrow I will die utterly content and happy with a full, dramatic and rich life, rich with experiences and relationships of all kinds of people from the strangers in my audiences, to my students, to my dear friends. And then, there were the strangers at the the baths in Chicago (Man’s Country) in the 70s and the bathhouse (St. Mark’s Baths) and the Hudson River piers, burned out and rusty, where sex was a 24-hour matter of fact, and constant evenings spent in back room bars and sex clubs in New York in the early 80s where my sexual career flourished. And then AIDS hit the community, and our culture of sexual liberation for which we had fought so hard at Stonewall in 1969 and in the ensuing years of the ‘70s, started to shred. There was sex everywhere, and we were dying while playing in our playgrounds. And, all the men I fucked with in New York in the early 80s, all those strange men, every one of whom exchanged names and phone numbers with me, are with me still and I grieve their loss terribly. With some of them I became fast friends. In Chicago, beginning in 1984, I became a part my beloved family of seven Queermen who became my closest companions and lovers. We were inseparables and all died and left me here to get deathly sick, but live in order to “carry the message of recovery” (Big Book of AA) to all Queer drug addicts, especially Crystal Meth addicts, and to do my transformational work of performing, teaching, and doing Spiritual Direction.

Then after nearly fifty years of licentious sex, I took a long break from my sexual career to focus on my vocation as a concert harpsichordist, a teacher (teaching is my true vocation which has taken various forms throughout my life, from age 11 when I gave my first full piano recitals), and spiritual director. Because of the presence of AIDS, in 1983 I started having safer sex when I moved back to Chicago. All of this and three abusive relationships, the last being 13 years long, and then being in 12-Step recovery from drug addiction for nearly seven years, I met Jerry in 2011, whom I could not have met and for whom I would not have been ready if I had not experienced all the challenges, obstacles, losses, joys and celebrations and recovery, being clean and sober from all drugs for nine and a half years, I probably would died from an overdose of Crystal Meth. The rest of the story is written up until this blog.

My relationship with Jerry was written ages ago in the Book of Karma, but neither of us was ready until three years ago. When I saw Jerry for the first time when we met at Starbucks, after a number of months of correspondence, I thought, “there you are, my dear. I have been waiting for you to come into my life again. I found you at last”. I knew who he was instantly without even asking if he was Jerry. It is fitting that it comes near the end of my life whenever that will be, and that we have this time together. I want years of life with him. But that is not up to me, and I have no control over it. It is up to the Mother, to Ma Durga. Our souls had mingled long ago, and it is right that this relationship came when it did. Because of all the things that have filled my life, both good and bad, although the bad always, in the end, turns out for the good, I am filled with a powerful gratitude and fullness for my life in all its twists and turns, and I am truly blessed. I have reached a quiet acceptance and surrender to what is and am content, an “easy silence” (The Dixie Chicks) both with my life in general and with Jerry. I can do no more than that.

Jai Ma!!

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